Caregiver burden in patients with behavioural variant frontotemporal dementia and non-fluent variant and semantic variant primary progressive aphasia

Abstract

Studies on caregiver burden in patients with frontotemporal lobar degeneration are rare, differ methodologically and show variable results. Single center longitudinal pilot study on caregiver burden and potential risk factors in patients with behavioural variant frontotemporal dementia (bvFTD) and semantic (svPPA) and non-fluent variants (nfvPPA) primary progressive aphasia. Forty-six bvFTD, nine svPPA, and six nfvPPA patients and caring relatives were analysed for up to 2 years using the Mini-Mental State Examination as global measure for cognitive performance, Frontal Assessment Battery (frontal lobe functions), Frontal Behavioural Inventory (personality and behaviour), Neuropsychiatric Inventory (dementia-related neuropsychiatric symptoms), Barthel Index and Lawton IADL Scale (basic and instrumental activities of daily living), the Caregiver Strain Index (CSI), and in most participants also the Zarit Burden Interview (ZBI). CSI baseline sum scores were highest in bvFTD (mean ± SD 5.5 ± 3.4, median 5, IQR 6), intermediate in svPPA (2.9 ± 2.3; 3; 3.5) and low in nfvPPA (1.6 ± 2.1; 1; 2). Similar differences of caregiver burden were found using the ZBI. During follow-up, CSI and ZBI sum scores deteriorated in svPPA, not in bvFTD and nfvPPA, and correlated significantly with personality and behaviour, neuropsychiatric symptoms, caregiver age, and instrumental, but not basic activities of daily living, Mini-Mental State Examination scores or frontal lobe functions. This study reveals differences in caregiver burden in variants of frontotemporal lobar degeneration. Caregivers should be systematically asked for caregiver burden from the time of the diagnosis to provide comprehensive support in time.

Association of Regional Cortical Network Atrophy With Progression to Dementia in Patients With Primary Progressive Aphasia

“…11,12 The difficulty in predicting the course of illness has been reported as a major source of caregiver distress, 48 and greater caregiver burden is associated with loss of independence in instrumental activities of daily living. 49 The imaging biomarker identified here may allow the clinician to estimate the duration of the MCI stage, which may be useful in planning psychoeducational support programs for patients and caregivers 50 and potentially for determining goals in speechlanguage therapy. Because speech therapy in PPA is most useful when a patient is in the earlier (MCI) stage of the disease, 51,52 neurodegeneration in networks beyond the language network may also be helpful in planning the introduction of compensatory strategies based on a patient's Patients with PPA with relatively greater atrophy (i.e., cortical thickness that is more than 1 SD thinner than the group mean), represented as a solid black line in each plot above, showed more rapid progression to dementia than those with relatively lesser atrophy (i.e., cortical thickness that is more than 1 SD thicker than the group mean).…”

Smartphone-based versus traditional face-to-face collaborative care for community-dwelling older adults living with dementia in China: protocol for an implementation science-based sequential multiple assignment randomised trial

“…The total score of ZBI ranges from 0 to 88, with higher scores indicating a greater degree of caregiver burden. The severity of the caregiver burden can be categorised into no or little burden (0–20 points), mild to moderate burden (21–40 points), moderate to severe burden (41–60 points) and severe caregiver burden (>60 points) 45–47. A reduction in caregiver burden is defined as a decrease by at least one level on the ZBI at the 18-month assessment compared with the baseline, such as from severe to mild or from moderate to mild.…”

“…The severity of the caregiver burden can be categorised into no or little burden (0-20 points), mild to moderate burden (21-40 points), moderate to severe burden (41-60 points) and severe caregiver burden (>60 points). [45][46][47] A reduction in caregiver burden is defined as a decrease by at least one level on the ZBI at the 18-month assessment compared with the baseline, such as from severe to mild or from moderate to mild. The proportion of caregivers exhibiting a reduction in caregiver burden will be calculated by dividing the number of caregivers whose burden has lessened by the total number of caregivers.…”